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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    The microwave meats that I buy are just the meat, not a meal. They are made by Hormel. You may not be able to find that brand, but you can take a look at the link to see what I am talking about. Some of them have gravy, which I assume you are not to have, but others do not.

    They don’t record all the phone calls?! :aghhh:

    I once went to the library to do something with my e-mail (don’t remember what), but did not take the e-mail service address. I have it bookmarked on my computer, never have to type it in. I tried to guess, but did not ever get it right. I had to come home and go back another day. :hug:

    Here we can get bottled meal replacement drinks. These are not meant for losing weight, but are used by elderly people with eating/digestion problems or anyone who needs a quick meal. A couple of brands are Boost and Ensure. Boost has a glucose control version that is for diabetics. My Mother’s doctor recommended it for her even though she is not diabetic. When my Dad was in the hospital and lost weight, they gave him Ensure muscle health formula. Glucerna is another glucose control product. They make bars as well as shakes.
     
  2. taniaaust1

    taniaaust1

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    You know you are in severe pain when you spill the boiling water from the kettle onto your stomach while trying to fill up a hot water bottle in your unsuccessful attempts to relieve the pain, but find when the splashed boiling water hits your tummy skin.. the shock of the burn is a split moment of RELIEF (stinging on burn feels better then attention on severe cramp) as its just helped take your mind off of the other place in your body which has the severe cramping pain, you are then tempted to start splashing your body with boiling water for pain relief.

    Sighs.. Ive been up since 4am in severe pain, trying not to cry from it (as I know crying isnt going to help so trying to stay calm with it, if I allow myself to start crying with it, I'll probably end up hysterical with the pain) but nothing is relieving it and at this point are so so tired and exhausted. (Ive gone as far as taking double my pain killers dose not caring if I end up ODing on them as all I want is the relief of the pain being gone but that didnt even help either). :(
     
  3. taniaaust1

    taniaaust1

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    Hi GcMAF.. My case is still trying to be sorted out, unfortunately the process is very slow.

    DisabilitySA is still looking into it, unfortunately they did say they want to "wait and see" before giving me any increase of hours, thou I know I certainly need an increase being sicker then I was before due to that delay in getting my support services in place when I moved :( ( the "wait and see" attitude by them on my support hours has probably come about due to the issues Ive been having with the support agency, who wasnt able to find workers when I needed them "there isnt many workers in your area", so all my hours werent being used.. as when they arent used by the end of the month cause the agency hasnt managed to get workers, I then loose the hours as that funding then goes back to DisabilitySA (rather then being held for me to use when they can find a worker.. so its a huge screw up in how things have been arranged to work). I dont think Ive gone a month yet (except this current one as the support agency seems to be making more effort now, I think someone has spoke to them.. Im currently trying to borrow hours on advance as I dont have enough hours to cover my needs) .

    Ive been wanting to follow up on the last DisabilitySA letter to me about what they are currently trying to sort out for me but the letter writing over the issues puts me under stress (Im too the point in which I just want to run from the issues as Ive fought to resolve them for so long now without luck, its hard to keep on trying to deal with people and just a big energy drain on me), which then only further knocks my health around. Im hoping thou to do that letter today and get it posted in the following week when my support workers are next here. They still arent willing to give me a case worker thou and have said that (so maybe I should get back to the complaints commissioner place over the things I know will still end up being unresolved? ). Its soo hard to keep up the fight to just try to get my lfife/health needs met.
    ..............

    GcMAF.. I dont at all mind you trying to help me (thanks Im highly greatful as I do need someone trying to help me get somewhere with all this crap) but I want you aware that your letter is probably going to make things harder for me as Im in my desperation, currently breaking the rules DisabilitySA has set on my support services by getting the support service to take me to the doctors clinic down the road to get my blood tests done.. as they stated in their letter that the support time they allocate to me is not to include medical things. (that transport and having someone with me at such times STILL hasnt been sorted). They will now probably send the support agency a letter telling them that they are not to take me for my drs blood tests or to the doctors seeing agency doesnt currently know that and apparently dont have the letter they sent to me.

    Kind of worried here that DisabilitySA could now pull my home support hours saying Im abusing them by using them for things they've stated Im not to use them for.. (for the medical stuff).
     
    Valentijn and GcMAF Australia like this.
  4. taniaaust1

    taniaaust1

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    [​IMG]
    Thanks GcMAF for your help.. im sure nothing would be happening anywhere if you hadnt been trying to help me.

    Your letter to help me could well backfire as Im currently misusing (out of desperation as nothing else is in place!!) my support hours as Im not supposed to be using them for things like to take me to doctors to get my blood tests done (a condition DisabilitySA has put onto my support but the support agency wasnt aware of this but may be now as I suppose DisabilitySA will inform them they arent meant to be helping get me medical places). The DisabilitySA letter to me dated 13th May made that clear. So Im stressing out now worrying now that they've been told Im using my support hours for medical stuff that they may pull my support hours on me saying I abused them. (this whole situation of wrongness towards me has me so stressed out).

    I put the letter at the top of this.
     
    GcMAF Australia likes this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    :hug: I hope that you are feeling better. Are there any service organizations in your area that would provide you with rides to your doctors and maybe even help you get settled in your new home?
     
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    SORRY TANIA
    :(
     
  7. taniaaust1

    taniaaust1

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    Little Bluestem.. Local council transport is for those who have short term issues eg say someone has broken their legs, not for those with chronic issues.

    - the red cross transport service takes many different people at once and cant tell who it picks up not to wear perfume (I have MCS). This is the same issue I had with why I couldnt catch the public transport rides back in my country town throu it was a different service involved. (the red cross transport service on top of that is hugely expensive eg $20 per zone and some of my doctors are 2-3 zones away... its maybe even more expensive then a taxi!!).

    Im just as stuffed now with living in the city as I was when I lived in the country.
     
  8. taniaaust1

    taniaaust1

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    Update

    I had the energy today to deal with ringing the HCSCC complaints commissioner again, thank god they seem to be efficient there (they are the only dept Ive found to be efficient so far) and thou I couldnt remember the name of the person dealing with my complaint and had lost the phone numbers too and only had the main phone number which I just looked up, I was quickly told who was dealing with my case and transfered on to talk to that person (Andrea.. who's very nice).

    She told me she actually had me on her mind as she'd just been dealing with my case before I'd phoned... she said that DisabilitySA was told by them to get back to them with their letter to me when they did it but never did so she'd been wondering what was going on and what response they had given me and trying to follow up on things herself. So I was able to fill her in that I recieved their letter two weeks ago and had spent the past two weeks putting together a response to it which will be posted to them tomorrow.

    She asked me to foreward copy of the letter to her too so Ive been working on that this arvo (and getting photos of the mess here to send her due to the still not enough support.. Ive acutally got mess in two places on my floor where I've dropped my meals a couple of weeks back and thou I picked up the food in my hands.. the mess of it is still there as it needs mopping and scrubbing now... egg yolk everywhere (all hard and dried now), splattered food over floor going up a cupboard.. all the crap which happens when Im attempting to do things when Im too dizzy or tired to be doing things but having no other choice but to try and then fail dismally.. and this has just all added to the rest of the floor mess which never gets mopped.

    Andrea from health complaints commissioner, seems to be really hearing and listening to my problems and seems to understand that I dont have back up doctors support to help me deal with the agencies due to not having the transport to get to doctors. She didnt say anything to me saying that part of the reason why I also dont have good doctors support is that doctors are not being educated on severe ME and how bad it can be so so we cant find any doctors close to home to get the support we need .. she seemed to be really listening to the issues. (it would be great is someone high up listens and really puts out that this is being a serious issue for many of us... maybe the situation then would be changed for many, maybe my complaints and the complaints about my case could help change government policy so we start being treated decently?, rather then being severely ill and ignored).
     
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    That is great that she is listening Tania
     
  10. taniaaust1

    taniaaust1

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    I cant believe this!!! (sighs well I can). The support agency (it was Margaret from CSI, I spoke with her on the phone yesterday) said that one of my normal workers would come this morn and take me for my fasting blood test, so hence I fasted again.. only to have no one ONCE AGAIN not show up!

    (I just rang them to ask if i can put in an official complaint as Im fed up of them being so UNREALIABLE, not just about this but so many other times too. its so often. Margaret also once offended me when I was upset over the mess of my house and rang up complaining about not having not enough support.. she said "it probably looks like my house" , so by that comment I dont know if she's taking my case and all the problems Im facing seriously either. Unfortunately who I need to speak to to put in an offical complaint isnt there right now when I just phoned but Ive been told they will ring me back). Im sick of like beating a dead horse to have things improved. I do not want to become known as the girl who is always complaining, but enough is enough.
    .........................................................................................................

    The CSI complaints person just rang me back (Adam his name is). He was nice and says its completely understandable that I arent at all happy about the situation. He's said he will get a worker to take me for the blood test .. on Friday 14th (but to get it confirmed). Im going to do a letter to them some time (not today, Im wiped now) so I have a paper trail in cause in the future they say I didnt put in an offical complaint or something (that has happened to me at places before, you verbally put in a complaint and orgs later deny it happened).

    I also just did a letter to Dr David Mitchell which Im going to send registered mail.. my letter is reading as follows.

    "
    Dr Mitchell,
    I thought I'd write as you didnt seem to have a good understanding at my visit to you of just how badly this illness, CFS/ME (I have ME) affects me (you told me that I need to try harder with things and to stop making excuses). Leaving your clinic, my legs were too weak to get up your driveway. I tried to use my cane to help me up it but still ended up falling onto the ground there, it was just too steep in my state to walk up after a visit to you. I ended up once I'd fallen down on your driveway, trying to crawl the rest of the way but my boyfriend ended up stopping me (pointing out to me I was about to put more holes into my medical compression stockings, I wasnt thinking), so he went and got the car driving it part down your driveway to get me.

    I collapsed with being taken to a clinic in my suburb to have one of the blood tests you wanted done. I ended up collapsed in the clinics carpark so was on the ground there .. my support worker ended up running inside to get the nurses there to help me get off the ground and inside, they helped me walk inside (my legs were shaking and weak). I then spent half an hour having to lay on a bed as i was so dizzy (while the nurses there were stressing about things as they had patients waiting and couldnt use the room as they could see I needed the bed).
    Ive been unable so far to get the other blood test done as twice my support agency has let me down.. not showing up when they'd said they'd take me. So im still trying to get that done.

    You also told me to get Dr Coyte to fill in the disability transport scheme forms... I only went to her once to get a lyme test arranged and my lyme test has since come back negative (thou its not conclusive) so I now dont need to go to her for that, you are my current main doctor (I have enough trouble trying to get to just one doctor currently without trying to get to many).

    I tried to put in a super effort after your visit and like to tell you the results of that .

    That night after I'd been to see you, I tried to cook a dinner but forgot it was cooking so it ended up black and not eatable (that is very commonly happening to me).. so I ended up going to bed without dinner. The next morn (still exhausted from a visit to you).. I tried to cook myself a good breakfast.. made myself a plate of eggs and steak.. I picked up the plate and (dont know how) but I dropped the whole plate with everything on it, over the floor. Three days later when exhausted again..after home support workers had been here, even having the home support people in can exhaust me, II dropped dinner so went without again.

    Anyway.. Im sharing this as I truely dont think you understood my situation, its not "a lack of trying" but rather Im quite ill and finding things very hard to do and often failing cause im so exhausted, weak, dizzy (if Ive done to much the day before or that day) when I do them. Two weeks later I still have splattered food going up a cupboard and the residues over the floor (I picked it up with my hands but floor needs a wash) and egg yolk too all over the floor still (now dried up) from where i dropped those from trying to do things when too exhausted.

    Im sending this by registered mail to you so I know you have recieved it. Ive had other doctors Ive seen for a while when ive later complained about things eg lack of treatment or whatever and they end up claiming they just didnt know I was that sick. So Im making sure you know the struggles Im having here just with daily life needs."
    ...........................................................................................

    I hope he dont dump me due to me sending that registered mail (once again Im wanting a paper trail for proof of things, what Ive said and has happened). I thou need this doctor thou as he is helping my MTHFR and helping me get my supplements around that right.

    But I also NEED Dr David Mitchell listening and understanding how things are for me as I need a good dr helping , who can fill in the paperwork which needs doing on things, give others the run down on my condition or whatever. Im still a bit upset that he thinks I just need to try harder. When Im already trying so so hard and overall actually considering just how sick I am, doing well, Im proud of my efforts (Im managing to stay out of depression, I meditate daily giving myself postive thoughts, I havent been suicidal for a while etc. Ive worked so hard on myself but do need physical support).

    No wonder so many of us end up with depression having doctors tell us we need to try harder ot to "stop making excuses" which was anther thing Dr Mitchell said to me, when daily we are pushing ourselves like athletes push thereselves. Thou we arent doing much, we are working very very hard.
     
    Ritto, heapsreal and Valentijn like this.
  11. Valentijn

    Valentijn Activity Level: 3

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    It feels a bit odd to be saying this, because I know how long you've been ill and I know that in some ways you know much more about dealing it with it than I do.

    But I think in some other ways you need to accept your current limitations, and be faithful in not trying to exceed them. Going to the shops is too frequently disastrous for you - stop doing it. I know how much it sucks to be stuck in the house so much since I'm in the same boat. But fighting that limitation and getting sicker isn't the answer. Find a way to send the support people with a list and the cash, or order groceries online.

    Maybe neither alternative is ideal, but surviving with a disability requires compromise. You have limited energy and you need to pick your battles. Getting more support is an important battle, as is keeping yourself as healthy and happy as possible. And if it's making you sick most of the time, the "getting out" factor of going shopping yourself is going to be of limited enjoyment anyhow.

    If a doctor's advice isn't practical, then don't follow it - it's not going to help you to prepare and eat a "proper" meal if you're getting sick afterward from PEM and/or OI and are then can't feed yourself anyhow. I think your letter to your doctor is a great start, but you need to apply that approach everywhere in your life. Set firm limits: "this makes me sick - I will not do it." And if someone tries to coerce you into doing it anyhow, tell them to fuck off - you don't have anything to prove to them by trying to do something that you know you can't do.

    Some things need an exception of course: going to the doctor when necessary, dealing with the support services, etc. But the firmer you are with your boundaries for non-essential activities, the more you'll have left for what you really really have to do.

    It can also help to make a list of the activities that you need and want to happen on a regular basis, and rank them by how easy they are for you to do without making yourself sick. For example, I can't do much cleaning because the scrubbing motion and pressure causes a lot of pain and triggers PEM. But I can do laundry (slowly and with breaks), tidying up, watering the plants, a bit of weeding while sitting on my butt in the sun, taking out the trash, etc, so long as I pace properly.

    And it's important to prioritize doing the things which will prevent further problems. I can't scrub dried egg off anything, but I can wipe it off when it's still wet. I can't scrub dishes, but I can rinse off them before anything gets crusty, or leave a little water on the crusty bits for an hour or so then rinse them.

    By doing the easy things myself, it leaves a lot less for my fiance to do, so he can focus on the hard things that will make me sick - vacuuming, scrubbing, shopping - and he won't get as overwhelmed as he would if I weren't able to do the little things. But if I try to go shopping one day, I spend the next few days struggling to do even the easiest things, and can't do many of my usual activities, which makes a bigger mess for both of us.

    Much as I hate it, the trade-off is too high for me to go out and about on a regular basis. But by taking it easy for a couple weeks and just doing the easy things, I feel good enough to go for a "walk" (on my scooter) with my fiance on the weekend without triggering a crash, which is something I enjoy far more than grocery shopping anyhow.

    You have very limited resources, both with regards to your physical capabilities and with your disability support. Managing them is going to require a lot of careful thought, planning, and self-discipline in sticking to your limits.
     
  12. taniaaust1

    taniaaust1

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    Yeah in some ways you are right and I should just accept things and get my groceries delivered.

    Im really worried thou that I will fall into depression (that would be so easy to do.. I spend a lot of time making sure Im not going to go into it) .. as an short time out, seeing people helps me to ward it off and not crash into dark places again (I have been suicidal in the past.. a trip out once a week for 30-45mins are extremely positive to my mental health). It would be different if I had visitors often (I thou only get a family member visit me about once every 3 weeks) or family living me.. but I get dreadfully lonely and just seeing people at shops once per week, seeing the kids in their prams etc and things like that are a huge emotional boost to me. (If I get depressed, Im screwed as in the past antidepressants havent helped me none and all they'd done is give me bad reactions).

    It's a case of what do I want.. I have two choices.. stay home all the time never going out and I know I will end up with poor mental health due to it and then not being able to mentally tollerate my physical issues well eg I still will have issues like cooking etc which I cant always do to deal with) or to be going out for a very short time (usually less then one hour) once per week and thou physicallly then worst, have a strong mental health as that outting has made my week.

    I truely dont think life is worth living if one is in an Igloo alone. Ive been there before completely cut off from this whole world due to being too sick to be around anyone and that truely sucks. I'd rather be dead then that...I'd rather take my own life if that is going to be the case. Im a social person (thou I also do like my own space) and not having family and friends around me is bad enough and bothers me enough without being cut off from the world too.. just thinking about that makes me want to cry (the supermarket is like my outside world). I just realised just thinking about it (which actually has just surprised me as I really couldnt before imagine myself going back to this but I just realised.. I will try to suicide if I end up cut off like I was in the past.. I truely cant deal with that idea at all.. just thinking about being cut off from people, from everyone ..hellish situation I was in in past..its like torture thou I had no choice in the past as I just couldnt be around people as their movement, their sounds, their noise used to hurt me. Being able to be around people is like a gift, one gift I currently have in my life, one of the very few things I have in my life. Its a gift that you dont realise unless you've previously been cut of from everyone for a very long time.

    Spend 9mths in your room alone and you will then understand how strongly I feel about being cut of from anyone again (then the one month 1 spent in prison in isolation cell (for attempted suicide and due to I couldnt care for myself), has all intensified how I feel about physically being cut off from people. I truely cant stand that idea esp when I are able to walk out of the house. I wish I could accept just being PERMANENTLY stuck out home and not going out (which you re advocating I do there) but I cant accept that.. esp since I feel well (that is until I do anything or go out and the darn POTS hits and everything else). I have my mental health which in the past has been extremely fragile to consider as well.. ones health isnt just about physical health, if you loose mental health you also loose physically too.

    Going food shopping and the two out of three times I manage it without collapsing (I collapse one third of the time sometimes more, more if hot, it isnt hot right now).. its soo enjoyable to me. It doesnt always make me sick going out 45mins once a week with support workers IF I take rests while out during that time (unfortuantely that always dont happen as we are in a rush due to the support time). I truely wish I felt fine with what you are suggestng.. I possibly could accept it if I couldnt get out all due to my health but I can. I feel great for first 30mins Im out. I go out for the 2/3rds of the time I can really enjoy it rather then never go out due to the 1/3 of the time the shooping trip goes disastously wrong. Thing is its russian roulette often which its going to be.

    today I went out ..shopping day but we ran out of time by the time she'd done my dishes and took me to post office as there was things I HAD to sort out there (I sat while doing all that thou). Butcher is right next to post office, it was a that point (as I had to stood at butcher counter) the dizziness hit with the POTS, so I quickly paid and got taken home.. all without any issues at all, recovered as soon as I sat in the car with no after effects as I didnt try to continue on when the POTS hit (if I had tired to continue on standing and doing things.. I would of been collapsed on ground in around 2mins and then wrecked till next day). So tonight.. right now .. I feel great still, no symptoms at all, not even one, I dont even feel tired at all.. it would be a very different story thou if I get on my feet and start doing things. I'll probably do 20mins of housework before I go to bed and be fine with just that seeing I didnt "push" myself today. Is when I push myself I run into big issues and very quickly

    (Ive found that others with ME/CFS without POTS find it very hard to understand that going 1-2 minutes over ones limit once its reached can very majorly affect. I once had a collapse on someone who has ME/CFS herself as she kept talking to me for 1 minute (she was saying goodbye) once I told her I HAD to go as was at my limit.. no awareness that some of us are hit very hard and fast at that point. (I ended up having to crawl out of her house to her car to be taken home)

    Yeah, that is what I got to somehow get the doctor to understand. Hence why thou I push myself here and there to cook (made more of an effort after the doctor had a go at me but quickly due to the mess I was then making with dropping meals and back to burning meals etc, brought to my attention just how stupid I was being to let the doctor get to me like that.. if I cant cook, I cant cook..its not much use pushing when you are then not good enough to even then have that food getting to your mouth). Im not about to go doing it all the time as it would be disasterous.

    yeah.. Ive got a ton better at that one over the years. I had to. Im surprised I let that doctor affect me (I soo hate someone thinking that Im being lazy), I shouldnt have let his words to me impact me the way they did when I knew what he was saying was wrong.

    I actually dont tend to do non essential activities.. everything I do in life is either done for my physical health or my mental health.. things are now down to those two things. Everything is "Is this going to help me or others with ME/CFS in some way?" (My ME/CFS advocacy thou is right now way down as I need my energy for me).

    All my life activities are aleady sorted out in such a way and all the harder things for me to do and I know how much each kind of activity takes out of me. I get the support workers to do worst for me activities.. standing ones (repetitive motions, scrubbing I have a lot of issues with too) eg dishes, putting sheets on a high line (I hang my clothes inside on a rack as then I dont need to raise my hams which sets off my POTS). I do my own laundry, weeding (I sit), umm the trash I screw up on (forgot to take it out again this week), tidying up, (Ive killed one of the native bushes here since Ive moved in, struggled to keep up with the watering.. so Im putting together a better irrigation system but its wet here now so not currently an issue).

    True.. prioritizing to prevent further problems is very important, I do do that. .. but by the time Im droppping plates of food, Im usually struggling to stand at all and desperately needing to lay down ie about to faint (I start falling into everything.. its hopeless me going and getting a bucket of water and trying to wipe up what is a big mess at that point as I then just end up either dropping the bucket of water or faling over it.. been there done that).

    About 5 days ago.. I'd cooked in a big pot and then doing that prioritzing to prevent further isues thing, I'd filled the pot then up with water to make it easier for my support worker to clean right after (and in case I had to reuse it before she came), I was thou exhausted after the cooking soup, got the water in the pot okay but then on trying to carry it to put it on cupboard across from sink as I was weak (couldnet put on or in sink as covered in dirty dishes), I then dropped the whole pot of soupy water on the floor.. whole 5L of it!! onto the floor. Of cause then all that got left on the floor, my kitchen a mini sea (then of cause the floor got left like that as if my kitchen had flood, no good me even attempting to further clean it at that point as I would of just fallen in the water and hurt myself.. , I really wasnt up to doing what I was trying to do anyway..cooking a soup had taken me past my limit and that is what caused the whole issue in the first place.. probably should of just gone right to bed after I did that soup but I was "trying to make things easier for myself for later" so pushed myself to "do the right thing" and put water in that pot..

    yeah I do that too and rise things if they make the sink. If Ive cooked thou, they dont often make the sink then right after I eat but end up there the next day as Ive usually had to head right to bed after I've cooked (as the cooking flares the POTS)..having dinner in bed by that point and often dont end up going back to the kitchen so dishes dont get rised. (I usually combine my activities too as an energy conservation thing to, all my energy is carefullly watched, no needless activities.. eg if I had to get another bottle of water so hence go to the kitchen, then the dishes would get carried out with me (IF I remember, I try to remember). It all depends on how I are.. if dizzy, with rising dishes they often get broken.. not a safe time for me to even rise the dishes. I know that as Ive ended up with smashed glass in the sink on quite a few occassions from doing that. (I break heaps of things here). Even those very simple things become not good things to be doing if one isnt in any state to really be doing them, they sound easy but can become things which can cause even more problems.

    What I do with everything is a one day on and one day off thing (every second day, I'll do things to my limit).. by doing that I can usually avoid a ME hit as its the next day the ME would usually hit me but I find if I dont do anything at all the next day, no house tidying, nothing physical etc.. I can completley avoid the ME symptoms and keep then feeling well, (if I do things that second day.. Im very bad the thrid day). Then Im back to my base line again with my endurance (haha its laughable calling it that as I last so little), after the rest day.

    That would be great, if I was getting to do something like that I probably wouldnt have a need to be going to the shops to see people. I have no one thou to take me for walks of any kind thou.

    Yeah I know that only too well.. all my week is planned with my pacing.. if I get anything unexpected happen eg support worker deciding to come on a different day, Im screwed as that is something I need to plan for and work around adjusting activities on the other days.

    Even if I didnt go shopping for 45mins per week.. right now I wouldnt be able to stay within my limits if I was cooking daily.
     
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  13. taniaaust1

    taniaaust1

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    [​IMG]Im going to share something but hoping people wont think Im nuts for doing this.

    Out of desperation, Ive been trying to do something for past month to hopefully remove my need of social contact of others (which is what makes myself going shopping so very important to me as Im social and need like real interaction with people but as Valjentin has pointed out, if I could let go of that I'd have a bit more energy), I have been trying to make myself a Tulpa http://en.wikipedia.org/wiki/Tulpa "interactive imaginary friend (that one really sees, hears, feels, smells.. hallucinates, you make it from your own imagination and then basically brain wash yourself to convince your mind your imagination is real so it becomes like a real person to you). I call this friend Im making Jesse.

    Its slightly working so far (havent seen my halluncination yet but Ive managed to hear it, smelt it and felt it, Ive put over 50 hrs trying to feel my imaginary friend in the past month).. trying hard to create this halluncination so I wont feel lonely at night and at other times. So Ive got a friend when Im stuck in my room (and if I become bedbound again). Thought Id share this idea as maybe it could help someone else too, an imaginary friend I can talk to and who will talk back to me, may one day help me keep my saniety.

    Anyway, this is my latest self therapy one could say to try to stop the isolation one feels from ME.
     
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  14. taniaaust1

    taniaaust1

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    My created being Jesse aged 20 years (I really should of done a better job at that drawing, the eyes are so uneven). [​IMG]
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Yeah, socializing is definitely needed - seeing the "real world" from time to time. But I still think you need to separate your real world time from your shopping time. Shopping is intense and once you start you can't really stop until it's done, no matter how sick you're getting. But getting out and socializing can be done in smaller bits which are less intense - sitting on a bench or on the grass in a park, versus walking around a while in a supermarket.

    A wheelchair or mobility scooter (as if!) would be a great help for that sort of thing - or even for more manageable shopping with your support worker. While a mobility scooter is probably a pipe dream, I think it would be worthwhile to figure out who you need to bludgeon to get a cheap folding wheelchair (transport chair). The legs might not be possible to elevate, but at least you could get around with less consequences than if you were walking a similar distance.

    And I agree - sometimes stuff happens and you're suddenly in a place where you can't take care of a small mess before it becomes a bigger mess. And when that happens, there is no choice except to leave it and hope for the best. But with planning and limitations, those messes can be avoided more. You know lifting a heavy pan of water is going to be hard, so don't! And if your OI is acting up at all, you're probably going to be throwing food around everywhere in the kitchen like I do :confused:

    Something I think we both need to do better is to get into the habit of saying "Am I in good enough shape that I'll be able to complete this project without pushing my limits?" before starting on anything, even something simple. Of course, it's hard to think sensibly when OI is hitting, but making a habit of asking yourself that question might help it become automatic even when too messed up to think properly. Sometimes you just can't predict when things are about to go downhill fast, but it can't hurt to try.

    Also, with regards to doing as much as you can handle one day without triggering a crash ... it might be better to do a lot less on that first day (when possible). An important part of pacing is to do little bits of activity with lots of rest between. In the most basic sense that applies to activities over the course of the day (OI and other issues permitting), but I think it also applies to larger chunks of time. If you're doing less on day one, you might be feeling better on day two and able to do a bit then too. Your way might be the best way, but it sounds too much like a mild version of the push-crash cycle, so it might not hurt to experiment a bit with cutting back on your activity day and seeing what happens on the rest day.

    I really hope you don't take any of this as criticism. It's a bad position you're in, and I want to help you find a way to make it a little better, and it helps me a lot in re-examining my own similar issues. But I think part of the problem is that you're focusing too much on what you want to do, or should be able to do, and not paying enough attention to the limits of what you can do. No solution is going to be perfect, because we're disabled. But we can make compromises between what we want versus what we can do, and hopefully come up with something functional.
     
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  16. taniaaust1

    taniaaust1

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    I completely agree with what you are saying there but I do not have anyone at all who can take me out to just do something like sit in a park for half an hour to enjoy that, the support agencies do not cater for things like that and I cant walk to any park (hence why my shopping centre trip is my social or get out time..without that there is no going out for me, the only time I get to go out is when something HAS to be done as I dont have the help time) Being able to do something like being taken out to a park would be lovely but that is not currently possible for me to do due to lack of enough help.

    My boyfriend is away a lot and currently away in India and even when he is around, there is no time due to trying to take care of my medical needs to do or other "urgent" stuff (im getting into trouble all over the place), no time for him to do something like just take me out and sit in a park (he's got very limited time to spend with me helping me). (He's only twice this year so far found time to take me to a specialist appointment and without him, I wouldnt have even got to one even thou I really need to be going to them). I live right near to the beach now and I love beaches but since Ive moved here right at start to the year, we've only twice been able to make time to go and sit down there for half an hour (the second time that became a priority was only cause I was starting to cry over never being able to get there, I just wanted 20mins out for once where nothing had to be done so thou there was other urgent stuff to do, we left the urgent stuff to take me to the beach for my emotional health).. as we are always running around my medical needs, chemist or whatever, just basic things I need to survive. (Ive needed to go to the chemist for the past week but support worker and I keep running out of time so Im trying to conserve the last of my Epsom salt I need to take for my bowel and having my bowel bleeding more due to not taking my normal dose, if my boyfriend was around, he would of helped me get to Chemist and sort that).

    eg next time he gets to come here (when he gets back from India.. he'll be trying to sort out my electricity bill for me.. I got triple changed a connection free wrongly and the company isnt listening to me (housing trust agency has told me to go to a MP about it but its all too stressful for me to further deal with).. there's always shit like that going on, he'll also have to sort out my supplements Im meant to be taking which my specialist has me on but cant order (I tried today, second time Ive tried to sort that out) as Ive lost my passwords yet again. He's got to also fix my shed so its waterproof.. my loungeroom check out that currently on the photo, its the loungeroom from hell which is bugging me (imagine trying to sit in that to watch TV.. that is what Im currently having to do, so sorting this is on my semi urgent list.. it can wait but I certain dont want to wait too long with it as its bugging the hell out of me and loungeroom like that is a stress factor for me which I need to solve). Its unfortuately going to be like that till my boyfriend gets back from India and is able to waterproof the shed which we had to get, so I then can put my unpacked house stuff out there still waitinf to be unpacked and hence have a usable lounge room again.

    (It's a nightmare as I still have important unpacked stuff in that mess so end up having to go throu that looking for things a lot eg last week, I urgently needed my glucose monitor, I was quite sick and thought it was my glucose but my monitor hadnt been unpacked yet and I had no idea what box it was in. I ended up looking for it unable I was unable to look for it anymore).

    Anyway.. what Im getting at is there is always major things to sort out and hence even when my boyfriend isnt overseas, there just isnt time to take me to somewhere like a park.... his whole time with me is spent rushing to fix things in my life which urgently need fixing, trying to fix things which are upsetting me re things like loungeroom looking like that (see that black frame in the picture, that is my bed which Im still waiting to be fixed so I can have a bed again, I did have the frame in my bedroom against wall but it fell onto my head one night and hit me in the eye, nearly gave me concussion). We dont get time to relax and enjoy things (he's having to function as yet another support worker to try to fill in the gaps to take care of my urgent needs).

    I just had a breakthrou there.. after another collapse at the supermarket where the whole shopping complex manager was called (rather then just Woolworths manager).. Ive finally been informed they do have a wheelchair there (due to my inability to get around well, I didnt even know they had a centre management part in the complex and thou Ive collapsed completely on the floor, in the stores there causing a lot of issues several times now, none of the managers of the stores had told me that wheelchairs were available). The big manager has said I can use it whenever Im taken shopping so we used it today. My second worker to take me shopping didnt show up on Tuesday so we did shopping today with only one worker with me in that wheelchair.. it was only "semi" workable and made me aware I need scooter as my support worker if I only have one cant push me in a wheelchair and push a trolley at the same time.

    I dont often have that option as usually Im aware that I certainly shouldnt be trying to do what Im doing but its the only way I can do what needs doing. eg dinner last night, Ive now got a burn on my hand with the skin coming off. . I know cooking is bad for me (there is NEVER a time when I can completely safely cook) but I still need to cook. Im bad at cooking even when Im at my good times.. I cant judge distances well when I put my hands into an oven and when I put my hand on a hot bar.. I often dont feel it so dont know Im burning myself (this is how I got last nights burn). Most cooking sessions I have are disasterous in some way.

    Even when Im good.. one minute standing does me in... that isnt much time to achieve something. After one minute on my feet standing eg just to make myself a hot drink.. my head isnt as good, my distance judgement isnt as good etc.

    Ive found that that doesnt work for me.. as even doing a little in a day each day, its like my body doesnt get a rest. I still need full rest days. Hence why I now do things the way I are.. Its not really push-crash thou as I dont get the crash as I rest that day, I avoid the crash.. (the crash would come in on the third day otherwise). I cant call it a crash when Im avoiding symptoms by doing it this way. Im avoiding ME crashes but cant avoid the POTS well when Im on my feet as I have it too bad and no amount of resting gets rid of that, I still get POTS the next time I stand to do things. (the POTS is my worst part of my ME). My ME stamina is improving (well was before the house move) with my methylation supplements but my POTS isnt (so I have the stamina and feel like I often have energy but I still cant do things.. one dont notice POTS tiredness much if one compares it with ME exhaustion).

    edit.. for some strange reason photo bucket wont load my lounge room from hell photo (it says it loaded it but then it doesnt appear when I look and see). Anyone have any ideas?
     
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  17. taniaaust1

    taniaaust1

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    Update

    I rang the Southern ME/CFS support group coordinator "Bradley" (he's a very nice guy who runs the Hallet Cove support group) to try to find out if there are any GPs suitable for me in any of the 3 clinics in my suburb (which is as far as the support workers are meant to take me), he didnt know of any there but said there is a good GP he sees at Aldinga (which is about 15mins drive away from me.. hence half an hour trip), who is a doctor who is very caring and listens (but who isnt a ME/CFS specialist but that dont matter to me as Im urgently needing just a GP to coordinate things etc and I have my current ME/CFS protocols Im on so not after ME/CFS treatment advice) but Aldinga is unfortunately out of my suburb (unless I pay for a half an hour taxi fare :( everytime I go to GP, which I need to go a lot.. sighs. I need to find a doctor willing and able to fill out the form for disability transport so I can get half price taxis so costs are coster to what I'd be able to afford). Umm I wonder thou if she'd be willing to do home visits, I will ring her and ask. (It would be great if I can sort something out).

    Bradley said Im the first person he's heard getting home support and that there is someone in his group (i think he said here was about 13 people going to his ME/CFS support group) trying to gather and arrange support services for those who have ME/CFS. (thou I often ask, IIve heard of only one other person with ME/CFS getting home support services, one of my support workers who's worked in the field for 13 years once had a client who had ME/CFS).
     
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  18. taniaaust1

    taniaaust1

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    Today I feel scared, quite scared.

    The reason why I feel scared is on the forms that I have been sent due to my fight to get the support hours I need which they want me to sign so they can look into ie "investigate" my case more (all this investigation is making me feel like Im being put under a police investigation or something.. sighs. Thou everything Ive told them about me is true.. others in their files have mistruths due to their disbelief or misconceptions over ME/CFS.

    Im sure they are probably doing it to try to come up with stuff to NOT grant me more hours rather then to really trying to see how ill I are. If they want to know how bad ME/CFS can be, why on earth arent they going by the info on the SA ME/CFS website rather then trying to get info about my condition from doctors I can rarely even get to (Ive only managed two doctors appointments this year due to being not being able to get there) or I havent seen for ages due to my transport issues, who seem to know nothing on severe ME/CFS. Why dont they just talk to my support worker who is currently helping me to hear exactly how things with me are, she seems how not well my brain works, my collapses and everything else which happens when Im trying to do things)? If they truely want to know how Im functioning.

    On the form there is boxes on possibly relevent agencies and places they are going to contact to try to find out about me (yeah I know that is standard stuff)... but one of the boxes they've crossed for looking into is "mental health services"... **sighs** shows me once again just cause we have been diagnosed with ME/CFS.. they automatically think we have mental health issues. This idea of mental health issues that gov agencies try to place upon me time and time again all cause our illness is "CFS' so hence we should have mental health issues of some kind (according to many).. well is making me NERVOUS. (they've crossed the mental health services box separetly to also the Austism SA org box.. Im fine about the Autism SA box being ticked as that part covers my Aspergers).

    To top that off I did have some mental health issues in the past (suicidal and severe mood swings which then caused a wrongful borderline personality disorder diagnoses to be placed on me by a couple of hospitals on top of my CFS diagnoses). Me getting suicidal was due to the lack of understanding and extremely bad treatment Ive got from health professionals etc and also due to my hormonal issues in past also gave me mental health issues before those physical health issues were diagnosed and being treated. So im fearing they are going to go and bring all that stuff up and use it as an excuse to rather then give me the more support hours I need; to rather instead they could turn around and say Im faking it or something. They could remove all my current treatments eg Florinef which are helping me by saying is all mental health issue (cause thou Ive pushed and pushed here, Ive never been able to get a tilt table test done so I dont have POTS tilt table test result to show).

    I had to change all my doctors in the past to get away from the mental health diagnoses bullshit (and kept that secret as it was quite damaging on me being able to get any treatment as it was stopping me from being able to get ME/CFS symptom treatments .. thou most doctors here dont treat ME/CFS anyway). If you've had a borderline personality disorder diagnoses put onto you even if it was wrongly so..they then dont believe anything you experience.. if you collapse, they even think you faked it (that happened to me, someone then put their boot HARD onto my head really hurting me try to make me get up off the floor).
    Ive been throu so many years of what could be called medical abuse with no treatment for my symptoms whatsoever when I had very extreme symptoms.

    Anyway.. Im so scared, my health cant afford to loose any of my support hours... and I cant stop now thinking of what will I do if I loose those hours.. I know I couldnt survive as if I lost the 5 hrs a week I get which already isnt enough and hence Im slowly getting worst.. if I loose them and dont want to end up long term bedbound again (which I dont think I'd survive anyway due to lack of support). to avoid becoming bedbound again, II can see no other option but to choose to go to jail again as it would be the only place I could get some of my main needs met and wouldnt be over exerting myself (except when they make you stand against your room wall in the morning for jail inspection, that got me into trouble in the past when in jail I was struggled to be standing there and it was very very uncomfortable for my head to be doing so, I got dragged out of bed when I was feeling very dizzy being upright and not well enough to be geting up).

    Im starting to plan what I could do to get put in jail again if things go very bad with DisabiilitySA and I then need to do something drastic again just to survive. (I truely hated jail when I choose to go there before due to knowing I'd be fed there etc and having no choice but to take that as my best option at the time for my health but I think it gave me some PTSD in the past which I probably already had but made it worst, Im over that now, no longer having nightly nightmares waking my neighbours up).. Im upset right now that Im back to have to consider such serious moves as putting myself in jail again, just to survive if things go wrong here. What kind of option is that? but for me there may not be another option if I dont want to risk permanently being bedbound again.

    Trying to calm down, things should be fine..but on a logical level I know that may not end up being the case due to not having any ME doctors in Sth Australia.. and only having doctors here who believe in the PACE trial and in "CFS" who dont have a clue that many of us need support just to survive. :( (Im crying this morn over the diplema Im in today, its hugely stressful.. or maybe they will do to me what they do in other countries and lock me away in a psych ward to try to treat the ME.. I feel like I could be under threat of the authorities cause I know the beliefs out there to do with this illness..Im very very scared but have no choice really anyway but to keep pushing to try to get my needs met.

    I know many would think Im bringing this onto myself, by fighting the system to get my needs met.. just like many thought Brian who is probably still locked away in England for his ME, was locked away for just keeping trying to get the help he needed. I soo understand his situation and hope my case wont here in Australia have the English kind of result but its happened before here and could well hapepn again. eg "Alison Hunter" and I dont think views in Australia have really changed shince then so right now Im scared and feel like Im at risk of being wrongly thought of by those who should be helping me.

    Logically I see my case could go 3 ways..
    1/ they will realise that severe ME exits and realise I have this and give me the more support
    2/ they will not believe me and say Im faking all my major symptoms hence probably take away the hours of support I already have leaving me with no option but to choose to go to jail to be cared for so unfortunaloy will have to also commit a crime so I can be sent there (like last time, I just will refuse bail and that will keep me in jail as long as Im getting more out of being in jail then if I was not in jail and trying to survive at home. Last time I did this, they did court hearings every week while I kept refusing bail so I could stay in jail as horribly as it was, the alternative being home without help was even worst).
    3/ they will proclaim Im a psych patient either putting the wrong diagnoses back on me (BPD, a diagnoses I recieved before they become aware that I had Aspergers) or saying ME/CFS is a psych illness and lock me up in a psych ward for my "so called safety" as I cant survive, cant care for mself without help.

    These things are how Im viewing my future and I have no way to know what things about ME/CFS they will choose to believe. So much fear and stress for me due to this. All I can try to do is to hold onto the hope that I will get the extra support hours I need and to prevent my condition from worsening more.
     
  19. taniaaust1

    taniaaust1

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    finally photobucket worked for me.. this is currently my loungeroom which I was complaining about yesterday.. I hate watching TV in that mess there. I have a wee bit of room for my legs so I can still sit in that mess in my lounge.

    [​IMG]
     
  20. taniaaust1

    taniaaust1

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    here is my latest burn from my last cooking attempt (photo taken today), its exactly the same spot I burnt myself in not long ago (seems this area is one on my hand in which I dont feel much when its being burnt so burn this area a lot, I didnt notice I was being burnt). Till this is healed again.. Im hoping I wont burn it in the same area again and burn it even deeper on the burn (you cant see in in the picture but the burn is about 1mm deep leaving a dent in my hand). I dont want to cover the burn up as I find my burns dont heal well when I do (go all mushy and pusy so I just leave them open)

    [​IMG]
     

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